Pediatric Nephrotic Syndrome Patient Stories

Aaron woke up with slightly puffy eyes when he was about two and a half years old. At the time, I had thought it was just a product of being sleepy. I called my husband, who was out of state on [...]

Alexis, or Lexi as she is known by her family, was diagnosed with congenital nephrotic syndrome when she was six weeks old. Since diagnosis, she has been admitted to the Children's [...]

When I was two, my entire body was swollen and I was in a lot of pain. I could barely open my eyes. None of my clothes fit me anymore, and my feet were so swollen that it hurt when I tried to [...]

Our son Andrew was first diagnosed with Nephrotic Syndrome at the age of 22 months. He woke up one morning and his eyes were very swollen. I really didn’t think much of it. I simply thought it may b

My Nephrotic Syndrome was controlled with Prograf for three years until I started relapsing every time someone near me sneezed. The steroids were sort of working to keep me under control, but [...]

We had previously sent in Emerson's story over a year ago and thought it may be time for an update. She was diagnosed with Congenital Nephrotic Syndrome at 8 weeks old, and spent most of her [...]

Kelly was diagnosed with Nephrotic Syndrome on April 16, 2015. It has been a difficult journey, but Kelly has always stayed strong and positive through it all. He is a big-hearted young man that [...]

The ups, downs, and scares of having a kid with NS! My 6-year-old was diagnosed in April of 2016 with Nephrotic Syndrome. It was a life-changing day for us! We had NEVER heard of NS before. We [...]

I was diagnosed with Nephrotic Syndrome at the tender age of 3. My mom pressed and pressed that something just wasn't right. Finally, I was diagnosed at a local hospital in February of 2015. We [...]

Mia was diagnosed with Nephrotic Syndrome right before she turned 3. We noticed that she was swollen around her eyes, and her belly was getting very large. I just thought maybe she was dealing [...]

Over the course of 10 months, Mossy was constantly unwell. Each time she picked up a virus or infection, her eyes and face would become puffy and swollen. We spent a huge amount of time at the [...]

My son jammed his thumb in May of 2014. The hospital commented on his elevated protein levels in his urine and sent him home. In August of 2014, he needed a physical to begin kindergarten, and [...]

It can happen to anyone. Will is an inspirational boy, the youngest of three sons who loves to play sports. When he was 3 years old, he was diagnosed with Nephrotic Syndrome. Living with [...]